Blog #30: Should Doctors Discuss Sudden Death With Epilepsy Patients?

(This blog was originally posted on February 7, 2013)

 

 

            Do patients with epilepsy want to know that their condition can be associated with death? This lethal phenomenon is known as sudden unexplained death in epilepsy(SUDEP). It was discussed on Blog #13, November 14, 2011, on this website. Each year, fewer than one out of 1000 persons with epilepsy dies of SUDEP (1). The cause is not understood. What is known is that SUDEP is more associated with poorly controlled seizures—usually generalized tonic-clonic seizure disorders—poor medication compliance, male sex, and alcoholism. There’s even an association with some anti-epileptic drugs, especially carbamazepine (2). The patient is usually found dead in bed.

            Many doctors are not aware of SUDEP. If they are, do they discuss it with their patients? Additionally, do patients and their caregivers want to know of this risk? Dr. Orrin Devinsky, a prominent American epileptologist and his colleagues, sent questionnaires to neurologists addressing these questions. The answers highlighted various complexities (3). Many clinicians have a “don’t ask, don’t tell policy.” Many doctors believe that discussing this small increased risk of sudden death would emotionally burden families already dealing with a serious condition. However, Many parents and patients do want to know about this risk.

            Among 1,200 neurologists who replied to the questionnaires, only 6.8% reported that they discuss SUDEP with over 90% of their epilepsy patients; 11.6 % NEVER discussed it. Seventy-five percent of these neurologists discussed SUDEP with less than half of their patients.

            Many physicians refrain from having this discussion because they believe their patients are at such low risk (3). However, since certain patient behaviors can minimize SUDEP, the discussion would appear to be beneficial.

             Another questionnaire targeted parents of children with epilepsy, including parents who lost children to SUDEP. It asked if SUDEP should be disclosed. The majority concluded that counseling parents on SUDEP should be provided by neurologists, but probably not at the time of first diagnosis. Most parents felt the topic should not be revealed to young children, but teens need to know the risk. SUDEP is more likely with poor seizure control, and this knowledge could ensure better medication compliance. Additionally, getting enough sleep, minimizing alcohol and minimizing stress can lower the risk of SUDEP.

            Parents disagreed as to who should inform their child of SUDEP—the doctor or the parent. Many parents believed it was their decision whether to disclose this information.

            Patients and caregivers completed another questionnaire. It revealed that virtually all of them wanted to know about SUDEP.

            Pediatricians manage the care of many children with epilepsy. However, a great many pediatricians (33% in another questionnaire survey by Devinsky) were unaware of SUDEP. Eliminating this knowledge gap could improve care and their appropriate counseling could reduce the risk of SUDEP.

1)      Hirsch LJ, Donner EJ, So EL, et. al. Abbreviated report of the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011; 76:1932-38.

2)      Trevino MC, Umyarova E, Maa E, et.al.  Sudden unexpected death in epilepsy.Neurology: Clinical PracticeDecember 2012; 356-58.

3)      Neurology Today. Reviewed by Jamie Talan. Sudden Unexplained Death in Epilepsy: What Patients Want to Know and What Clinicians Do and Don’t Say. January 3, 2012; 24.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at theDavid Geffen School of Medicine at UCLA. DINGS is his first novel.